MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Replies 1
Last reply 11/24/2015 - 9:40am
Replies by: arthurjedi007

I have failed Keytruda and the docs are now offering me Ipi/Nivo combo.

I am a little bit scared to do this combo as i had pretty bad GI issues with Keytruda.

Has anyone had success with the combo after failing Keytruda?

I am not sure if i have any other options anyway!




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jsagraves's picture
Replies 3
Last reply 11/24/2015 - 5:02pm

I'm not really sure if I'm stage 3a, 3b or 3c.  Based on the results I received today, I would assume 3a.

So I went through full node removal in my neck and underarm on my right side.  The surgery took place Friday, November 13 and I received biopsy results today.  They removed a total of 59 nodes from those areas and every one came back negative for cancer, which I'm very thankful for.

I'm very numb from the top of my ear down to the top part of my rib cage and trying to gain strength and range of motion back in my arm and turning my head.  Other than the numbness and drainage (I have a drain tube), no significant side effects from the surgery.  I'm assuming the numbness will dissipate over the months ahead.

We are still trying to determine whether or not to pursue further treatment, although I think I've ruled out interferon.  I may try to find a clinical or observe from here on out.  We'll see.  Anyway very thankful for the good news today and while it could be said that the node removal was unnecessary (in hindsight), you just make the best decision possible with the information you have and don't look back.

Any thoughts on clinicals versus observation is appreciated.  I'd like to focus on treatments that build my body and immune system, not break it down further.

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Anonymous's picture
Replies 19
Last reply 11/24/2015 - 11:37am

Let's get some positive stories for the newly diagnosed.

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Anonymous's picture
Replies 2
Last reply 11/22/2015 - 6:13pm

This is my first scan since diagnosed with micromets in one node. What can I expect? I've heard people say my pet light up like a Christmas tree. Does that mean I can see the screen during the test.

After the test do they just tell you your done and you can go or do they explain anything they find or see?

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Cynlee's picture
Replies 1
Last reply 11/22/2015 - 3:26am
Replies by: stars


 I had a shaved biopsy done almost 5 weeks ago on the top of my foot . Came back invasive melanoma Clark level II and .35 mm. Both vertical and Radical growth phase.  I was just told the results on Monday night. 

I have a surgical oncologist appointment on Tuesday. There is now a very large  bruise on my foot growing form/around the spot. Plus I think I see the beginning of two more spots almost forming a triangle with the original spot at the top of triangle. The bruise pretty much engulfs one of the new spots and almost to the second one.  They look just like what the first one did as it came up on my foot in the past 10 months. 

Does anyone know what this bruise is? And can I be getting two more spots? 

Thanks for any answers. 

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sgrain's picture
Replies 7
Last reply 11/21/2015 - 8:47pm

I've been coming to this board since 1998 when I was first diagnosed stage 3.  As one poster below said, I haven't been on the board much because I've been busy living my life but I try to post when something significant (good or bad) happens.  This time it's something good.  I hope it gives many of you hope and insight to how these immunotherapies work.  Here's a brief history of my journey:

In 2012, MM was found in my right lung which was surgically removed.  In 2013, MM came back in both lungs.  I then tried the following drugs:  Ipilimumab (didn't work), Zelboraf (worked a little, another right lung tumor disappeared but then left lung tumors grew), Dabrafenib and Mekinist (didn't work), Keytruda - worked but with complications.

I was on Keytruda for 9 months.  While I was on it, my first 2 PET scans (3 months apart) were getting worse and a lot of metabolic activity but my oncologist said to be patient so I stayed on it.  At 9 months, I had GI problems which turned out to be 2 bacterial infections so I had a CT scan and stopped the Keytruda.  A month or so later, I had another CT scan which showed decreased turmor burden in the lung.  I then had a PET scan and got the same results, the largest tumor was almost non-existent and very little metabolic activity in another small tumor.  2 months later, PET scan showed No Evidence of Disease (although my Dr. said No Evidence of "Active" Disease).

Both Mayo and my Oncologist say it is likely that the first 2 PET were actually due to internal inflamation and not tumor growth.  When I got the infection and stopped treatment, things cleared up and we could actually see the tumors disappear.  I never thought I would see this day, being NED, but have hope for all of us dealing with this terrible disease.  Good luck everyone!

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Sce1's picture
Replies 10
Last reply 11/24/2015 - 11:49am

My 6 year old son has a mole on his back that has changed in the last two months. He has Ben Sen by a dermatologist in the UK. The dermatologist was not a paediatric specialist. At the start of the appointment she told us that she thought it was fine and she would make an appointment for 12 months. Then changed her mind and he is now seeing a paediatric dermatologist in 3 months. I'm really worried. The mole is small but has a light pink area spreading around it. I'm not sure if I should get a second opinion or wait for the appointment in three months? Your thoughts would be very much appreciated. 



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Anonymous's picture
Replies 4
Last reply 11/20/2015 - 9:37pm
Replies by: Anonymous, liberty04281

Can someone explain to me why nodular is so much more aggressive then others. I mean I know its the cancer that grows downward but once its in your lymph nodes are the cells more aggressive then the other types of melanoma cells.

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My husband was diagnosed in May 2014. His disease has stayed in his liver and has the GNAQ mutation. He has cutaneous melanoma techincally but it is behaving much like Ocular Melanoma. He's tried keytruda, a tcell therapy clinical trial at NCI, and ipi/nivo. He's also done a few TACE procedures to try and stamp out the tumors. 

He's still seeing progression and we were just informed about Isolated Hepatic Perfusion with Dr. Pingpank at UPMC in Pittsburgh. He's signed up and approved for surgery December 7. All of his doctors agree this is the next best option. Has anyone done it? Any successes/failures? Side effects? Recovery time? Any info would be great it's very hard to find.




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Nanners10's picture
Replies 2
Last reply 11/20/2015 - 4:27pm
Replies by: Nanners10, jenny22

Hi all, I am new to posting on this website but not new to reading and learning from this website. A quick background of my situation. I was first diagnosed in 2002 with a 2.24mm MM on my shin. WLE was performed and that was all that was needed until January 2014 when I found a lump in my groin. FNAC was performed and MM was found. I had a superficial lymph node dissection done in March 2014 only 1 out of 4 lymph nodes came back with MM. I entered the ipi vs interferon trial in April 2014 (randomized to receive the lower dose of ipi) and completed the protocol in June 2015. I have just received news of a regional recurrence to two lymph nodes. Now I am back to figuring out the next step in this battle.

I am currently waiting for surgery to remove the deep inguinal lymph nodes and have some questions that I am hoping some of you can answer.

1. Are the deep inguinal nodes enough to remove at this point? The CT scan I had last week doesn't show any involvement of iliac or pelvic nodes but the deep ones were clear when I had my last surgery and obviously something was still kicking around.

2. Should I be pushing for a much more aggressive surgical course including removing the iliac nodes?

3. Is anyone aware of any trials that are open to someone that has completed an ipi trial (unsuccessfully) and is still stage 3? From what I can see most are open to unresectable or stage 4.

Any guidance or help that can be provided is much appreciated.

Nancy H.

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Gwenmorgan's picture
Replies 4
Last reply 11/21/2015 - 7:02pm

I have had one dose of ipi/nivo on 11/12 with no immediate reactions.  

Anyone else have strange allergic type reactions on everyday food/activities?

Sunday, I had leftovers for dinner (seafood)  and about an hour later my mouth started tingling and my upper lip swelled up.  Also, I had used the same face lotion I have for years.  I took Benadryl and it went away after 2 doses a few hours apart.  

Yesterday, I was searching for some positive data on lepto mel and my right eyelid swelled up.  I took some Benadryl again but not better yet.  Waiting for phone call from Clinic, it isn't an emergency or anything just strange, dry and itchy and swollen, like pollen got in there while sitting in my office typing.  Only one eye too (no makeup or anything)

no fevers.

I also have rosy cheeks like a painted Santa.  Braf/Mek caused bright rosy checks but I have been off that for a few weeks.

My  thought is that my overly sensitive skin has become ridiculously overly sensitive but I wanted to see if others had bizarre skin reactions?

I have 9 tiny brain mets, 5 treated with cyber knife but still there, much smaller than they were last Spring. 

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yunielth's picture
Replies 2
Last reply 11/22/2015 - 7:06am
Replies by: yunielth, arthurjedi007

My sister was diagnosed last year with melanoma Stage 1A. More than a week ago she presented discomfort in his right knee. She went to the doctor and they did an ultrasound, the doctor diagnosed her synovitis. She continued with the discomfort and went back to the Doctor for an MRI, and the result was that everything was fine, but he make her blood tests. Not sure why he made her blood tests.
Could it be related with melanoma?
Thank you very much and greetings


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Beehappy's picture
Replies 8
Last reply 11/21/2015 - 11:30am

My husband is on the ipi vs. nivo trial for stage 3.  He has had his primary - 5mm Breslow, no ulceration, mito rate 3 removed from shoulder and had a total lymph dissection under his arm - 40 nodes removed - 2 nodes positive with micro mets.  He has had 3 possible doses of ipi (which is known to have skin side effects).  Today the oncologist focused on a red spot/lump under he arm about an inch from the scar from his CLD.  It looks like a spider bite but since it has some firmness they are thinking reoccurrence.  Going in for a biopsy tomorrow morning - so it will be a long weekend of waiting for results.  

If it is positive for melanoma he is out of the trial.  We will be exploring other options for treatment.  Wondering what I should be researching, what people have found success with.  Also trying not to freak out about the possibility of moving to a stage 4 diagnoses.

Just as we were finding our "new normal" it feels like the rug getting pulled out from under us again.


Rebecca (wife of a stage 3c warrior)

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Cynlee's picture
Replies 6
Last reply 11/22/2015 - 12:52pm


 I am just newly diagnosed with malignant's superficial spreading melanoma on the top of my left foot.   My dermatologist has sent me straight to a  surgical oncologist at a cancer hospital. I see him on Tuesday. 

Little background it was a "mole" that came up on my foot within the last 10 months. Pathology report says its level II, Breslow .35mm with both radical and Vertical growth phase. Mitotic <1. 

I can't get a good understanding of the report because everything on the internet is for places other than the foot. Even when I  registered on here they did not even have an option for me to say it was on the foot. It listed every other body part. 

Im pretty sure that with the pathology report it would not be all that bad if it was somewhere else on my body right?  Just how bad is it with it being on my foot?

thanks for any information positive or negative  


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